One family's journey into the land of Early Onset Alzheimer's/Dementia

Husband's last camping trip

Monday, December 29, 2014

Whew, a very rough couple of days.

Husband has slipped so badly these last few days.

The other morning, I had to run to the grocery store and left him with Kristen. When I got home, she told me that right after I had left, he had taken his clothes off and asked her what to do with his clothes. That really shook her up. She was crying as she told me. She got him dressed, again, but, he was so confused as to why she was dressing him.

I went to check the mail and instead of walking, I took the car. Our mailboxes are at the front of the complex and we live in the back. It was bitter cold and windy, so I took the car. I was gone for maybe 5 minutes. When I walked in the door, husband had come out of Kristen's bedroom. I asked him what he was doing and he said he had been looking for me. Thank goodness I hadn't been gone any longer or else he may have tried to get out the front door.

It's getting scary.

This morning at breakfast, I put his food in front of him. Now, when I do this, I have to show him his food, tell him what it is and put the fork or spoon in his hand. When I do this, I also have to close his hand around the silverware. This morning was no different. I went back into the kitchen, loaded dishes in the dishwasher, tidied up and finally got my breakfast. When I went back into the dining room (about 10 minutes later), there he was, still sitting there, fork in hand, staring at the ceiling.

Our dog, Snowball, loves to get on husband's bed in the morning and lick him. This morning, as Snowball was doing this, I asked husband what the dog's name was. It took him some minutes, then he said, very softly, "Snowball?"

Friday, December 26, 2014

I hope your Christmas was filled with family, friends and the Birth of Christ.

Husband did not understand it was Christmas. He had to be shown how to unwrap his gifts and when he did, I had to tell him what it was as he couldn't tell if it was a package of socks or a new pair of flannel pants. Because he doesn't wear regular pants anymore, I bought him 4 new pair of those fleece pants to help keep him warm.

For the past few years, I have dreaded the Holidays. This year was so different. There was joy in my heart.

One would think that with the death of my Mother earlier this year and now with husband being so far gone, I would've been so sad. Just the opposite. I even sang a few Christmas songs to my dog!!!

Dinner was good. Tish, Jace and the kids came. There was laughter in my home. Husband, although so confused by all the activity, smiled, nodded when spoken to and seemed content.

It was all I could ask for.

Next week is the beginning of a new year. I don't know what this new year will bring, but I am ready for whatever. In all probability, husband will die, but, it's OK.

Friday, December 19, 2014

Another post? I am trying to get back into posting on a regular basis. Making the time is an issue and there are days I just don't want to talk about Alzheimer's at all.

I have been thinking all day about what husband said to me last year this time. He told me that last Christmas would be his last. Here we are with another Christmas less than a week away and he's still here.

When husband was diagnosed in April of 2010, they told me 3-5 years. With 2015 looming, I keep thinking that the 5 year mark will be up.

Just lost, deep in thought today.

Today was also the end of Home Health Care. However, with Divine Intervention, Home Health Care will continue until the end. Big sigh of relief here and grateful. So grateful.

Husband's blood pressure took a dive this morning. Luckily, the nurse was here and with a little activity, it came back up. Still low, but, not at a dangerous low.

Husband seems in good spirits today. Confused most of the time, lost in his own world, but, spirits seem up.

The stripping of the bed continues in the middle of the night. Why it doesn't wake me up, I'll never know. I wake up in the morning and find him at the end of the bed with no covers on. Strange, very strange.

I had read that an Alzheimer's patient loves to take their clothes off at the end. Husband does this, on occasion, but, it's the stripping of the bed I have never heard about.

Here's to a good day. I try to grab onto these good days and try to remember when we have dark days.

Tuesday, December 16, 2014

On the home front, we're in what I call a "holding pattern". Husband's BP has been stable. Memory? All gone. He retains nothing. He sleeps 16-18 hours a day. When he is awake, he sits in a somewhat stupor. He still talks to someone, usually up in the corner of the ceiling. It used to be every now and then. It's daily now. His jaw is jutted out, with his bottom lip turning outward.

Husband does not know how to use the toilet, or, for that matter, what it is doing in the bathroom. He wants to move it away from the sink and when it won't move, he gets quite upset.

The "visitors" are coming more frequently, I've noticed. "They" only come in the middle of the night. I will wake up to hear husband laughing. This laugh sounds not of this world. It's a haunting, beautiful, Holy sound. That's the only way to describe it. It used to scare me. Now, it's comforting, knowing "someone" is there.

And me? I'm doing fine. I am looking forward to Christmas. I've bought husband gifts. He will have a nice Christmas. I am determined to be happy and not become bitter. I think I"m doing an OK job of that.

I have come a long way since diagnosis 4 1/2 years ago. I've grown. I've changed so much. I take it as it comes now. Some days I wake up and look at husband still breathing and ask God, why? Other days, I see him still breathing and thank God for another day. It's like that.

Husband wants me to start reading him the Bible. When he wakes up this afternoon, I will read him passages from the Bible. I hope he likes that.

It's bitter cold now. I try to keep a fire in the fireplace when husband is on the couch. He tells me he likes that.

I love making him smile. When he smiles, I know I've made an impact on him. I've made a connection with him.

Friday, December 5, 2014

Yes, I know, it's been almost a month since my last post. Every time I come here to post, I am interrupted by nurses, phone or husband.

I have had a very scary few days this week. Husband's blood pressure has been lower than normal for the past few months, but, I've just been watching it. However, on Tuesday, when one of the nurses was here, his BP went to 70/40. We had him switch positions, switched arms, drank juice, to no avail. She called the Dr, they said to hydrate him and if it got any lower, call 911. Dr wanted to see him on Thursday morning.

Luckily, I have a BP machine here, only, I thought it was a battery operated one and I haven't used it in probably 4 yrs. So, I got it out and to my surprise, it's one you plug in to the wall.

He was very pale with his eyes sunken in. He turned to me at one point and said, "Am I going to kick the bucket?" Both the nurse and I laughed it off and made light of the situation. I remained calm on the outside, but, inside I was terrified.

It was one scary few hours. I am still shaken over it.

I now monitor his BP throughout the day. It's gone down a few times, but, not as low as 70/40.

We saw his Dr yesterday. BP was OK. I was given instructions on what to do. Dr said it was time to sign all end of Life Instructions for husband.

So, it's officially and legally on file now. As I was signing these papers, the wording was so point blank. Every sentence contained the words, "Resulting in Death." Ugh.

We had a great Thanksgiving. Went to Tish & Jace's. It was nice. Husband enjoyed himself.

Gearing up for Christmas. The tree is up, lights are on. Husband enjoys looking at the lights.

On December 20th, Medicare will stop paying for the home nurses. Folks, I really need your prayers that somehow, someway, Medicare will approve for more time. We have come to love these nurses and need prayer on this. Thank you in advance.

Tomorrow is our annual Holiday dinner here at our apartment complex. It will be in the Clubhouse. I am looking forward to that.

And there you have it. I should be sad for all that is going on, but, I'm not. I am actually looking forward to Christmas and a new year. No poor pitiful me kind of attitude.

Saturday, November 8, 2014

Well, after 2 years of struggling with myself to letting go of husband's care, we now have a nurse 3 days per week and a physical therapist 2 days per week. Can we all say, "yay?"

I was quite hesitant at first, what with strangers coming in my home, but, the weight has been lifted from my shoulders. There is such a sense of freedom about me. Something I haven't felt in a very long time.

Husband, at first, was not too keen on the idea. Now? He is so relaxed around them and has accepted them into our family, because, they are fast becoming family-like to me.

I had to take husband to Denver on Wednesday for his 3 month check-up. Dr F was so happy about the professionals taking over his care. He said probably the reason I always hesitated was because it just wasn't time yet. Now, Dr F said, is the right time. Yes, now is the right time. The disease has taken over now.

Everyday he seems to slip more and more into the unknown. Everyday the clarity gets less and less.

I woke up at 4 am today and caught husband trying to walk in the living room with his comforter in his hand. He said he was taking a walk with his Dad.

Loves, loves, loves to strip his bed and throw everything on the floor. Loves, loves, loves to strip himself.

He will ask me questions about when he is gone. Will I give something he cherishes to so and so? What will happen to his TV? What about his clothes? This will happen fleeting, in a moment of clarity. It goes just as fast as it came and he will once again slip away.

It's all good though. On the drive home from Denver the other day, we were talking about Heaven. He said he "hoped" he would go to Heaven. I told him, "Well, then, you better watch your P's and Q"s". He didn't laugh. He didn't understand what P's and Q's were. The clarity once again was gone, and he was once again in a stupor.

I now see light at the end of the tunnel. I am doing OK. I find myself laughing a lot more lately. Good, healthy laughing. It's just going to be OK now.

Thursday, October 23, 2014

It's been way too long since my last post. There's just not much more to say.

Alzheimer's has completely taken over now. Husband knows me, but, for the most part, knows not much else.

His left eye is gone now. Right eye is fading. Legs are just about gone. Has no control over his body, including wetting himself throughout the day.

I now buy daytime diapers as well as nighttime diapers. Along with the nighttime diapers, I have to buy pads to put in the nighttime diapers to avoid leaking on his bed. For the most part, it works. Except husband is now in the stage where he takes his clothes off in the middle of the night, strips his bed, gets back into bed and wets. Exasperating.

I scolded him the other morning about this and like a little boy, he hung his head, and started to cry. Realizing I had been too hard on him, I apologized, but, told him he must try not to do this anymore. his reply was, "But, I am sick."

Yes, I know.

He retains nothing. He gets confused after eating breakfast. Within the hour, he wants to know if we are going to eat today. Once I remind him that he's had breakfast, he's fine. For awhile. Or, he will ask me if he's eaten that day.

Eating is difficult for him. He hunches over when attempting to eat. I now have to place spoon or fork in his hand because he can't see the silverware.

I got approval for a nurse to come to the home. I don't know when she will start. Haven't heard. Hopefully soon.

I also purchased a Cremation Package for husband. Well, purchased by paying monthly to the Neptune Society. It's a start. Social Security told me a few years back that at the time of husband's death, they will pay me around $800 towards burial. I have no idea when that will be paid out.

I have decided to finish the book I started 2 1/2 years ago. It's a work in progress. It's painful and stressful as well. To go back to happier days when all we had to worry about was working, raising a family and keeping our heads above water. As I look back on our life way back then, the saying, "don't sweat the small stuff" comes to mind. How simple that other life I had seems now!!

I am hoping to have the book completed by Spring. I have no idea how to go about publishing. Will cross that bridge when the time comes.

Good news. I got my car fixed. Jace fixed it for a fraction of the cost. Makes me so mad that you take it to the dealership, rack up all kinds of "repairs" when in fact, those "repairs" were not needed. In going through my car, he said it's a great running car, just needed a water pump, timing belt, two drive belts and a pulley for the timing belt. So thankful for Jace. What a great Son-in-Law!!!

I will try to update more often. It's just getting harder as my life is consumed with Alzheimer's.

Friday, August 29, 2014

Fall is coming to the great state of Colorado. Ever since husband's diagnosis, I dreaded Fall. It used to be my favorite time of year. This year, I am looking forward to it once again. I feel like I have been dead inside for so long. Too much sorrow, too much mourning for what has been lost and what could've been.

No more. I feel alive again. I am planning a future for me.

Husband's Dr appt on the 20th was good. I got so many answers.

First off, I was right about husband's decline. They said there has been a noticeable decline, but, it was expected. This is what they found:

Husband's left eyesight is almost gone. He can see somewhat, but, his vision is distorted and he cannot tell what is what out of that eye. Because the damage involved is mostly on the right side of the brain, his entire left side is most affected.

He did not know the day of the week, date nor the year. He couldn't tell you objects that they would show him.

Dr said the hallucinations will be more present now.

I told the Dr about his sleeping most of the day and night. He said to let him sleep, his brain is shutting down and that is to be expected from now on.

He advised me to take him to his Primary here in the Springs, as we are now to watch for signs of pneumonia. He said that during end of life with Alzheimer's patients, their body will produce too much fluid that will settle in the lungs. They don't have to get a cold or virus. It happens naturally.

He wants a nurse to come as well as Hospice. He knows of the trouble I've had getting insurance to approve a nurse, but, said now is the time, insurance will approve it now.

He informed me I have to start making final arrangements for husband. I told him I didn't know where to begin.

Funnily enough, on Tuesday, I got an application from the Neptune Society in handling husband's final arrangements (I think the Dr did this) . I did the application and is ready for the mail. I don't know what the cost is. At least I can make monthly payments.

On the home front, I took my car in for what I thought was a loose belt. After 2 hours of diagnosing, I have $4,000 worth of work to be done on my car. Great.

I prided myself on keeping up with my car. So much for that. I don't know what to do. I am in no position to buy another car, nor do I have an extra 4,000 laying around.

I am taking one day at a time in regards to the car. Whatever will be will be.

Saturday, August 9, 2014

I'm still here. Still fighting and kicking. Surviving. It's all I have left.

Life these days with husband has been quite difficult. He has declined at an alarming rate. We see Dr F the 24th (I think) of this month. They may tell me how much longer, or, worse, shrug their shoulders, baffled at this man who has survived longer than they first believed 4 years ago. Well, me too.

Some may say, "But, aren't you glad you still have him, making memories?" Uh, no. I cannot make memories with him. He, at times, doesn't even know me, usually at night when I take his glasses off with him sound asleep. He will open his eyes, smile and say, "Well, hi there." He may ask me what I'm doing here, or, ask me crazy questions. Of course, I always find an answer for him. He believes anything I say to him now.

He has lost total control of all bodily functions. He is in protective underwear during the day. I've had to get actual diapers for him, along with the pads that I insert in the diapers to help absorb any leakage.

He has been sleeping during the day, more and more. Taking him anywhere is difficult. He panics. He has started taking his clothes off at all hours of the day. He, for some odd reason, strips his bed at all hours of the day as well. I will wake up in the morning to find him naked and all bedding on the floor.

I have started telling him no at some requests he demands of me. I usually give in to him, but, lately, I have found myself telling him no at some of his demands. He does not like it one bit, but, there are times I think, "Enough is enough." After awhile he forgets I have told him "No!!", comes out of the bedroom with that hazy crazy look in his eyes and be fine.

Since my Mother died, I have felt a peace like no other. Oh, I miss her, so much so that it's an actual pain, but, this peaceful feeling is more prominent as days go by.

I no longer get sad or upset at anything related to husband or Alzheimer's. Surviving the death of Mother, well, if I can do that, I can do this. It's as if she's beside me, giving me comfort and guidance.

Sometimes in the afternoon when husband is sleeping, I sit in my chair and imagine him gone. It no longer takes my breath away. There is no pain associated with it anymore. Not that I don't care. Just the opposite.

I am making plans. For me. For when he's gone. It'll be just me then. A new life. New beginnings. Funny, it's not scary anymore.

Friday, June 27, 2014

Where do I begin? The dog days of summer are here and I am so glad I live in Colorado now. Summer's here are just about perfect.

I took husband to Albuquerque the first week of June. We stayed for 5 days. I had a great time. A lot of fun. Husband did OK, spending a lot of time with his Dad.

But, talk about hot. By end of day 2, I thought I was going to spontaneous combust. Miserable, hot, stifling heat. My only saving grace was Pat & Christine's refrigeration air conditioner. I can't believe I used to live in that. Ugh.

Had a great drive down and the drive back home was going great until,,,,,,,,,right outside Trinidad, just as I topped a small hill, there on the other side was a cop!! He also pointed his radar at my car. Of course, I immediately slowed down, (well, more like took my foot off the gas pedal), and watched to see if he would follow me. Thought I was in the clear, until I saw him pull out and speed towards me.

He was nice about it all. I was so embarrassed about speeding. I'm actually a good driver, but, my lead foot took over and didn't even think about the possibility of getting a speeding ticket.

Oh well, lesson learned, ($169.30 later) Ouch, that one hurt.

Husband has declined once again. He has just about lost control of bodily fluids, wetting himself and his bed quite frequently during the day and night. I am going through diapers double that I did before. I found night time diapers on Amazon. Going to order those as soon as money comes in. Expensive, yes, but, he needs something more absorbent.

Hallucinations and delusional behavior has been constant for almost 2 weeks.

Tish gave me two new bathroom rugs. And, this is the craziest thing, husband is deathly afraid of the rugs. He actually cried when he went in to the bathroom. I now have to keep the rug over the bathtub, unless he is getting out of the tub. When he steps, (with my assistance), he cringes, and starts to shake. This is one the oddest things I've noticed about him. Mind blowing.

All in all, things are moving right along. Disease is taking full control now. Who knows when it'll end.

Wednesday, May 28, 2014

After 2 1/2 hours of working on my laptop, I finally got my internet fixed and cleaned up. I was concerned that I would have to take it in and pay a lot of money to get it fixed. Thankfully, that wasn't the case. I apologize again for the lousy post yesterday.

While in California, having had 4 days alone, I came back refreshed and with a different mind set. Gosh, just in those few short days I had plenty of time reflecting on the airplane and late at night after everyone had gone to bed at my sister's.

It's hard to explain, but, I'll try.

I have had a dread in my chest for about 4 years. It's just been there with me on a daily basis. During my Mom's Memorial Service, we were given a big white balloon, attached with a card. We each wrote a message, and released them at the same time in her back yard. While watching those balloons float up toward the Heavens, a burden seemed to lift from my chest. I didn't recognize it at first, but, once again, settled on the plane, homebound, it dawned on me that this heaviness and dread was gone.

It has not returned and I've been home for over a week now.

Something else happened to me.

I had never been to Denver Int'l Airport. If you get the opportunity, go to Denver Int'l, the place is huge!! Tish took me, and, all the way there, I was a nervous wreck. I couldn't put my finger on it, as I have no problem flying, even alone. It was just such an uncomfortable feeling.

Once on the plane, they kept asking people with carry on bags to check them in at the gate, with no charge, as the flight was full with no available seats and overhead bins were filling up. I had already had my bag in the overhead bin, so it was not a problem with me.

As I sat there watching people board, I became emotional and just so nervous. Being that I had a window seat, I looked out the window and started whispering to my Mother. I asked her to please be with me as I was so scared and did not know why. During this time, the flight attendants kept informing us of the full flight and how there were no seats available, and, be respectful of passengers and the overhead bins.

We pushed off from the gate and started down the runway. Tears were running down my face as we took off, with me still whispering to my Mother.

Once we were up in the air, I started reading a magazine, trying to relax. I got a warm fuzzy feeling and looked to the seat next to me. It was empty. And then this overwhelming feeling came over me and I knew my Mother's spirit was sitting next to me.

Monday, April 21, 2014

I reached for the phone to call my Mother yesterday to wish her a Happy Easter. Her first words to me would've been, "Yes, He is Risen." I would've teased her, asking her if she had been a good girl and what did the Easter Bunny bring her for Easter.

And then I remembered that I can't call her. She's dead. Gone.

This thing they call Grief can be overwhelming to me at times. I'll be fine and then it hits at the most unusual times.

My sister is having a Memorial for her on the 17th of May. She made sure I will be able to attend. Of course, making arrangements for husband was tricky, however, plans are made, got my airline ticket and away I will fly. Not to see her, but, to honor her and say "so long."

It seems like the days are flying by. Each day melts into the other. Nothing unusual happening around here.

I will be taking husband back up to Denver to see the Neurologist at UC Denver. They are now accepting his insurance, and, I felt very comfortable with Dr F, plus he is a colleague of Dr A's in Albuquerque.

I had been taking husband to a local Neurologist here in the Springs, but, the last time I took him, the Dr told me that husband is so far advanced, that, in his opinion, he needs to be seen up at UC Denver.

We go May 7th.

For the most part, husband has been holding steady. I used to love this reprieve from Alzheimer's. Now I am very uncomfortable with it. It won't last. And when it hits, it hits. Imagine a brick thrown in your face? Kinda, sorta like that.

I've noticed the legs are getting very stiff. Very stiff.

As far a sleeping and night terrors, we have had none. He sleeps pretty good. "The man" comes and goes.

He just sits on the couch and nods off. All day long. He will occasionally raise his head and "talk" to "someone". Or, he will snap out of sleep, grin and try to whistle for the dog(s). Or, his eyes will roll in a very dramatic way. Disturbing and not a pretty sight to see.

A few weeks ago, I woke in the morning to hear a knocking sound. I couldn't find husband. The bathroom door was closed. Jumping out of bed, I ran into the bathroom and found him cowering in the corner, knocking on the wall, asking for help.

Each day, I try to find something good in the day. I try to fill my mind with good thoughts. I try to laugh and fill my heart with warm memories. As time goes on, it's getting harder and harder to do this.

I have been talking to God and my Mother a lot lately. It helps.

So, taking husband back up to Denver, where they will probably tell me it won't be long now, or, shake their heads and tell me they can't give me a time frame, and, flying out to California for a final farewell to my Mother.

Friday, March 28, 2014

I will go about my day as any other day. I will try not to let the bitterness creep up in my throat and have it rule my day.

It's just another day, I'll tell myself. Because, in reality, it is.

My Mother is in the final stage now. Maybe today will be the day I get the call? Will I be even more bitter next year if the call does come in?

Oh, life and it's many challenges. Ups and downs. Highs and lows.

I had an anxiety attack last night. Crazy.

Husband has been so so. Once I get him up, bathed, dressed and fed, he will shuffle to the couch and sit in a stupor. His head will fall forward and he will nod off until it's time for lunch. Once lunch is over, he will shuffle to the bedroom, and fiddle with whatever he can get his hands on.

Yesterday, he had an old greeting card. And, there he sat, for about two hours, "reading" this card from days gone by.

It's something to see. Where he can't read anymore, he can stare at something for hours. I mean, stare and you can see the concentration on his face. Actually, it's amazing to me.

So, today, I will do my laundry, make my grocery list, bathe, dress and feed husband, do dishes, change the sheets on the bed, tend to whatever and watch husband as he slips into the unknown world of Alzheimer's.

Sunday, March 16, 2014

My Mother is still holding her own. Every morning I say to myself, "Is today the day of her departure?" And yet, "the call" does not come. She's a fighter, that gal.

I got a call earlier this week from an old neighbor in Albuquerque. She wanted to know how husband was doing. I told her. She said, "He was supposed to die a year ago."

First of all, this neighbor is not my cup of tea, however, I thought it was nice of her to call and ask about husband.

It didn't really hit me until yesterday. Suddenly, I got mad. And then I started thinking.

Do people really think this is all a bunch of malarkey? Do people honestly think I'm making this all up? For what purpose? Money? From who? Publicity? Sympathy?

After husband was diagnosed, I read somewhere that once a person is diagnosed with his rare type of Alzheimer's, it's about 3-5 years. We are on year 4.

Dr A told me last June he gave husband 6-9 more months. We are on month 9.

All I know is, my husband is dying.

We have good days. He will be in the here and now state. Suddenly, like last night, he will ask me what our dog's name is. I will tell him. He will look surprised.

Husband cannot walk, talk right, see right, bathe himself, shave, brush his teeth, roll over in bed, dress himself, use a fork or spoon right, hold his head in a normal position, use a remote for his TV, control his bodily functions, dress himself, and, last, but, not least, retain anything.

So, you ask. How much longer? How come he is still alive? When is he really going to die?

Wednesday, March 5, 2014

So, here I am. It has been some time since my last post. I needed time. I am so tired of posting the same thing, over and over again. It was just getting to me. I needed some quiet time within myself, wanting to listen to my heart.

I have always felt that when my Mother passed, husband would follow soon after.

My Mother suffered seizures beginning last Friday. She was taken by ambulance to the hospital. My Mother is now a vegetable, coming home today with Hospice. There, they will be with my Mother until she passes.

And so it begins.

Being that my Mother is in California, there was no way I could travel to be with her. Luckily, my one sister flew out from Phoenix, the other flew in from Oregon, and the one sister in California is the one my Mother lives with. I was physically sick knowing I could not be at her side. But, with husband being in his state, I could not leave him. I am his everything. Like a baby needing his Mother.

Maybe it was for the best, as she knows no one now.

Husband will ask me about my Mother. He was afraid I was leaving him and flying out to California. When I told him no, he said he would "get scared if I left."

I talked to my Mother last Wednesday. I told her I would call her on Sunday. I couldn't keep that promise.

And now? I will never, ever be able to speak to my Mother again. Forever. That's a long time. I keep running her voice through my head. Memorizing her voice. Remembering what she sounded like. I hope I never forget her voice.

And husband? He wanders the house, especially at night. He is obsessed with the toilet. I wake up and find him in the bathroom, flushing the toilet over and over. He now likes to wear his glasses when he sleeps. Tells me he can "see" better when he's asleep. Just to name a few of his "favorite" oddities lately.

I don't talk much lately. I like to be alone in my thoughts.

So I play the waiting game. Waiting for "the call" from my sister. Once it comes, I will turn my attention to husband.

Sunday, February 2, 2014

Happy Ground Hog's Day!! Seems the ground hog saw his shadow, so, we will have 6 more weeks of Winter. Lovely.

Moving to Colorado in the summer was a great idea. I was not really prepared for the Winter here. Of course, I knew it would be cold. But, boy is it cold here. I am actually pretty proud of myself driving in the snow here. Considering I haven't caused one accident, I think I am adjusting well.

Also, I've become quite the expert in getting and keeping a nice fire going in the fireplace. Every time I am starting a fire, I think of the contestants on the reality show, Survivor. Ha, maybe I should apply on that show? I'd keep the home fires going even in the jungle!!

I know, I know, we need to "talk" about husband. Only, I don't want to. I want to pretend that all is well and I am surviving my first Winter here in the great state of Colorado.

Only I know we can't avoid the subject, right?

Husband, in a nutshell, is declining rapidly now. Let's see, maybe I should just give you a rundown.

Here goes:

Eyesight has all but gone. No longer can he focus on anything. When I talk to him, he will move his head around, looking for me. Even when I am right in front of him.

At mealtime, I have to place the fork or spoon in his hand and close his hand for him. He makes a big mess when eating. Of course, the dog loves it.

Gets confused in the bathroom. Cannot distinguish between the toilet and bathtub. Always tells me the toilet is broken.

Constantly wets himself. Even though he wears Protective Underwear, he will pull his pants down and wet his pants. 3-4 times a day.

Speech his garbled at best. Voice level is getting very soft. Hard to hear at times.

Legs stiff. A challenge when dressing and changing him. My back will never be the same.

Night terrors. To date, that is one of the hardest. They start at sunset and disappear by sunrise. Some nights are better than others. He may wander the apartment, or, scream that we need to get out of here, or, a little kid has taken his soda, or, the dog(s) are lost, or, "someone" is bugging him, or, he has to go to work, or, his saw just broke, I could go on and on, those are just a few of the most recent nights.

Monday, January 20, 2014

Yes, I realize it's the middle of January, and yes, my last post was the 1st of January.

We had gone up to Denver for a nice visit with my niece and her family on the 2nd. We had a great day. Kim got me aside and said how well husband seemed to be responding to her. I was surprised too, but, glad he was enjoying himself.

The next day he woke up and stated hallucinating, not bad hallucinations, but, completely out of touch. After 6 days of this non stop, he seemed to come out of it, but, now, is more quiet, still hallucinating some moments, then back to his reality, then slips back again. All day, every day.

Fun.

We have an appointment at Memorial Neurology Clinic on the 4th of Feb. Going to check them out, and, if I feel more comfortable there, then, I will switch him.

Husband, I feel, needs stronger, more effective medicine, especially at night, to help him sleep.

Unfortunately, his Neurologist would do nothing when I called. So, I called Dr A in Albuquerque who called me back and agreed with me that he does in fact, need a stronger drug to help in these end days. Luckily, he referred me to Memorial and I can't wait to meet this Dr. I hear it's a good place to go.

Hey, I'm not looking for a cure, as the other Neurologist suggested, I just want him to be more relaxed, drugged, if you will, to keep him calm.

I never believed in taking or giving high powered drugs. It was just never my style. That was before Alzheimer's came to live in my house. Now? Bring it on.

Basically, that's it to date. Husband woke early, was talking about how "Santa Fe would work". I have no idea what he's talking about. I coaxed him back to bed where he's sleeping now.

I'm taking it like a trooper, but, I'm tired of taking it like a trooper. Enough.

I know a lot of you are praying for us. Thank you. Now, my prayer request is let him go. It's time.

You know it's bad when, every morning when I wake up, I go to his bed and find him still breathing.

And, every morning, when I find him still breathing, I shed a tear and ask God to take him. He's suffered enough.

Wednesday, January 1, 2014

Of course we had a quiet evening last night. Husband has begun to have the dreaded night terrors again. They are something. I don't get much sleep.

He has mostly been in his own world, with an occasional dose of reality, then, slips quietly back away from me. He has been sleeping more during the day.

When he looks at me, his eyes no longer focus. One eye will be slightly turned up while the other will be staring blankly ahead.

He thinks we have 2-3 dogs. Still. When I am with our dog, he will ask where the other one is. I usually tell him the other one is sleeping. No need to correct him. It wouldn't make sense to him anyways.

Husband, for some reason, thinks he wears dog tags. Where that one came from is beyond me. He will ask where his dog tags are and I tell him they are put away. Again, better to go along with it.

He has started to take the batteries out of his flashlight, puts the cap back on then says his flashlight is "broken". That is maddening.

In fact, everything is broken.

He gets scared and asks me if the windows are locked. Are the doors locked too?

2014 for me will bring big changes, for sure. I actually have Peace about this new year. I know it will make me a widow, and, I'm OK with that. Hey, it is what it is.

About Me

Please join me as I care for my husband who has been diagnosed with a terminal illness called
Early Onset Familial Alzheimer's Disease. A very rare form of Alzheimer's, inherited on his Mothers' side of the family. All other family members died by age 47. My husband is 46. Join me won't you, as I travel this road that will leave me a Widow. Laugh with me, cry with me.